Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

July 6, 2013

Saturday, July 6, 2013Tonight's picture was taken in July of 2003. Mattie was in his book corner of our living room and he seemed to gravitate to this Sesame Street book which had flaps that opened. This may have been one of Mattie's favorite books initially. Mattie loved to look at photos of Elmo, a well known Sesame Street character. Mattie also loved Elmo's voice. Whenever Sesame Street was on TV, Mattie would stop in his tracks to watch Elmo. Mattie would multi-task through most of the other parts of the show, but not when Elmo was on!!!

Quote of the day: Hard is trying to rebuild yourself, piece by piece, with no instruction book, and no clue as to where all the important bits are supposed to go. ~ Nick Hornby

As I indicated in last night's blog posting, I was in a state and a funk from the car accident we had. However, my funk really wasn't about the accident itself, it was just a trigger to my much larger funk. After writing last night's blog, I then sent Peter a text message. I was upstairs on the computer and he was downstairs in his parent's living room. Mattie conditioned Peter and I to text message each other (so he did not have to hear us talk!), and therefore some habits are hard to break. I wrote to Peter that I wanted to go out for ice cream. Certainly there was ice cream in the house, but it was the notion of going out and trying to re-engage with the world which was important for me. Some people turn to alcohol or other drugs, I turn to ice cream and chocolate. These are my drugs of choice. Later that evening, I received an email from Kristen, Mattie's oncologist and our friend. It was actually Kristen's email that turned my mood around. Kristen supported Peter and I through some of the worst times and through the hardest decisions in Mattie's care. Though Kristen is a medical doctor and HIGHLY professional, I could tell early on in our interactions that she was also human and had a compassion side to her. It was that side which I fell in love with and why in my opinion she is an outstanding oncologist. Last night she contacted me because she read the blog and wanted me to know she understood what I was trying to express and also appreciated why I needed time to disengage and not socialize with anyone. Kristen's message further verifies my feelings..... when someone else can listen, hear you, and understand you, it elicits a very powerful emotion. An emotion which makes you feel human, normal, and not out in left field. A field which I think most bereaved parents live in at times!!! Kristen did not need to write to me, she isn't our doctor anymore, she wants no funding from Mattie Miracle, and has no ulterior motives. She writes because she wants to and feels a bond with us. Which is why her message meant the world to me and I do believe as a medical professional she is walking through her own grief journey regarding the loss of Mattie.

Today we drove with Peter's parents to Concord, NH. The Capital of New Hampshire. Concord is filled with shops, antique stores, and restaurants. After shopping and lunch, we walked to my favorite place in Concord... The Granite State Candy Shoppe. This is a photo of the Granite State Candy Shoppe from 1927. Ironically the structure of the store looks quite similar to this today! This Shoppe was created by a man named Peter who came to the United States from Greece. He opened up this store and then passed down his legacy to his children and then his grandchildren. I must admit that visiting this store is almost worth the drive to Concord, NH. The fragrance of chocolate as soon as you walk into the store is intoxicating! Despite it being in the upper 90s, I did buy chocolate to take home with me and while in the store I also purchased homemade ice cream..... coffee-oreo cookie! What a flavor to remember!!!This evening, Peter went to Logan Airport to pick up a rental car. We are driving this car home to DC tomorrow morning! We will leave Peter's car in Boston for a month in hopes that it can be reconstructed and operational again. Peter's Explorer holds many memories for us. We bought it when Mattie was two year's old and we drove it everywhere, especially on family vacations. It reminds me of Mattie, so leaving it behind in Boston, seems like we are not taking our entire family home with us. Sounds silly I am sure, since this is just a car. But it is a car with many memories and frankly when you lose your child to cancer, remembering and memories are sometimes the only things that keep you going.

July 5, 2013

Friday, July 5, 2013Tonight's picture was taken in July of 2003. Though Mattie had access to the Atlantic Ocean, he preferred being on the deck of the house and playing with the hose. We spent a lot of time with that yellow hose that week. The deck and the chairs on the deck were the cleanest around thanks to Mattie's spraying!Quote of the day: Good memories are like charms...Each is special. You collect them, one by one, until one day you look back and discover they make a long, colorful bracelet. ~ James Patterson

When I lived in Boston, I remember Peter's family talking about Pickity Place. But since I had never visited it, I really had no idea what it was. Today we drove to Mason, NH to experience Pickity Place for ourselves. Since 1786, there has been a quaint little red cottage which has graced the hills of southern New Hampshire, seemingly untouched by time. The enchanting cottage was chosen by Elizabeth Orton Jones as the model for her illustrations in Little Red Riding Hood (Little Golden Books, 1948). Today it is a mecca for gardeners, foodies and anyone looking for inspiration and relaxation. This little cottage is named Pickity Place and it is located on a hilltop hideaway at the end of the winding dirt road. When I was a child, I read Jones' Little Red Riding Hood and I am familiar with the book's illustrations. What I did not realize though was the house illustrated in the book was based on a real life house..... Pickity Place. In addition to the historical significance, Pickity place also treats you to a five course lunch and the opportunity to walk around in their beautiful gardens. Not just any ordinary gardens, but it is within these gardens that many of the herbs used to prepare our lunch originated!

As you enter Pickity Place, you are greeted by this whimsical sign. As you can see, the sign says "Grandmother's house (the character in Little Red Riding Hood) was built in 1786. This cottage was used by Elizabeth Orton Jones to illustrate her version of the book Little Red Riding Hood."

This is a profile of Little Red Riding Hood's House! It is a real cutie, charming, and surrounded by lush and beautiful vegetation. Though it takes about 90 minutes to drive there from Boston, you would be amazed to know that the entire dining room of the house was filled today. In fact people who came without lunch reservations were turned away. It is that popular!

One of the rooms inside Red's house is a tribute to the story. Look at this adorable room, filled with Red Riding Hood's cape, dolls, and if you look closely you can even see a wolf in Grandma's bed!

Before lunch, I snapped a photo of Peter with his parents in front of Pickity Place. The cottage's dining room serves lunch in three shifts. One at 11:30am, the next at 12:45pm, and the final shift at 2pm. I imagine they believe that giving people an hour and 15 minutes to eat a five course lunch is enough time. But for a person like myself who eats slowly, it most definitely wasn't enough time and I felt rushed.

I snapped several photos of the gardens that surrounded Pickity Place. They are inviting, lush, and they also have cozy nooks to sit in and people watch or relax. This cute little red table and chairs in the garden caught my attention. It caught my attention because if Mattie were with us, he would have gravitated right to that area!

What do you think of this old tree? This tree sits right in front of the cottage and the shape of it alone is intriguing but when you stare at its girth, you have to imagine it is quite an old tree.

After lunch, Peter and I walked through various gardens where we saw many of the edible flowers we ate at lunch as well as the numerous beds of herb gardens!

At lunch I had a homemade lavender lemonade. I am very familiar with lavender, but not in terms of drinking or eating it! Today I learned it makes a wonderful herb to place into a drink. These beautiful purple flowers in this photo are lavender. There were beds and beds of them and what you can't see in this photo are the hundreds of bumble bees buzzing about this lavender. I can see why they are attracted to it!

This is a photo of Peter and me in the Pickity Place Dining Room! Our five course lunch consisted of:

On our drive home, we stopped along the side of the road to snap a photo of the beautiful mountains in New Hampshire! The sky was a perfect blue and the clouds looked just like cotton.

However, on our drive home from New Hampshire, we got into a car accident. We weren't far from Peter's parents house. Maybe 30 miles away. At an off ramp, we were stopped behind a SUV. The SUV then began merging with the traffic, so Peter also checked for on coming traffic and started to merge as well. However, without notice, the SUV in front of us slammed on the breaks. For no reason, since there wasn't any on coming traffic she was trying to avoid. Needless to say, we hit her. Fortunately the driver and her car are fine. She has a bit of a dent. Whereas Peter's Explorer is a MESS. None of us were injured, but then again given how slow we were moving, I would be surprised if anyone was hurt. Nonetheless, even at such slow speeds, Peter and I are devastated to see the extent of damage to our car. The whole front end has caved in, we lost transmission fluid, and we can't start the car. So literally where the accident occurred we were partially blocking a ramp. Peter and I immediately mobilized into action to handle this situation. Peter dealt with the other driver, exchanged insurance, and then called our insurer. While I was on the phone with AAA arranging for the car to be towed to a Ford dealership. Keep in mind that it is as hot as blazes here!!! Like 90+ degrees with humidity. AAA couldn't have been nicer. They also had the police come to the scene to help protect us from getting hit by other cars and to direct the flow of traffic. In addition, the tow truck showed up within 30 minutes as promised.

However, the bad news is that we will have to leave our car in Boston for a month to get it repaired and rent a car to return home on Sunday. I am not sure how I am feeling about any of this, other than somehow this snapped me into a depressed mood. This evening Peter is downstairs with his parents and his brother's family and I am sitting upstairs. Some times certain things trigger me off and when they do, being around normalcy doesn't help me at all. It is hard for Peter and I to spend time with children period, even on a good day, and right now it doesn't feel like a good day. I realize I have experienced Mattie getting cancer and dying, and I should be able to put a car accident where no one got hurt into perspective. But here I am sitting, not being able to have a mature perspective and instead just feeling like this is yet another sign to Peter and I about our life's happiness.

July 4, 2013

Thursday, July 4, 2013Tonight's picture was taken in July of 2003. I have been posting a series of photos this week from our first trip to the Outer Banks with Mattie. Mattie was very cautious about the Ocean and for the most part he did not care for the feeling of sand on his feet or the crashing sounds of the ocean waves. I tried to get Mattie to look at the camera in every photo I took, but Mattie had no plans for taking his eyes off the water for even a minute. Quote of the day: As far as we can discern, the sole purpose of human existence is to kindle a light of meaning in the darkness of mere being. ~ C.G. JungTo all our readers, we hope you had a good July 4th holiday. I do pause and realize for so many of us who have lost a child to cancer, such holiday times are difficult and challenging. It is a day about family and having a child in our life tends to make you want to celebrate, enjoy the fireworks, and the festivities that come with the day. When Mattie died, I would say for the most part the joy for festivities and happiness also disappeared from our lives. There is guilt associated with happiness, and as the feelings of guilt dissipate with time, you are just left with an empty feeling. Somehow the emptiness seems exacerbated with any holiday. So on this day, I reflect on the fact that we miss Mattie and the life that he added to our world.Today was another incredibly hot day in Boston. The intense heat is not something I would say Bostonians are used to dealing with, unlike those of us from DC who are used to summers which are simply hot, sticky, and oppressive. We spent the day doing various things and seeking air conditioning in between adventures. One adventure we went on was we drove to Houghs Neck. Houghs Neck is a one-square-mile peninsula in Quincy, Massachusetts. The peninsula has been called the "flounder capital of the world" and once hosted six boat rental businesses geared toward catching the bottom dwelling winter flounder that spent the cold weather months in Boston Harbor.Why did we choose to visit Houghs Neck? Mainly because Peter and his parents knew I wanted to see it. As my faithful readers know, I have a close friend by the name of Mary. Mary is 80+ years old and lives in an assisted living facility. I met Mary in 2008, when Mattie was battling cancer. Mary and I share a very important commonality, we both lost our sons to cancer. Mary came into my life during a very important time period and when Mattie died, I spent several weeks with Mary in her assisted living facility. We practically spent every day together and while I was grieving the loss of Mattie, she was grieving the loss of her husband, who died a month after Mattie. In all reality, Mary and I have spent five very intense years together, certainly not a lifetime, but nonetheless enough one on one time together that I know a great deal about her life, her family, and where she used to live. So where did Mary live prior to moving to Virginia? Houghs Neck! Over the course of five years, I have seen pictures of Houghs Neck, heard stories about the community, and also through Mary's cousin, I keep up to date on Houghs Neck happenings. Naturally I am sure other people could have heard Mary's stories and not become as invested. So I am not sure what that says about me, but when my friend talks, I listen. I have spent ALL of my life living in or near a big city. I can't relate to life in a small peninsula such as Houghs Neck. Here is a place that celebrates community, they have family fun days, picnics, celebrations and the list goes on. For five years I have imagined in my head what Houghs Neck looks like, and I have heard about its fields, marshes, parks, schools, and the list goes on. Do you think it is possible to feel like you know a place, without ever having visited it before?! I do think it is possible and today confirms it. As we drove from one place to another in Houghs Neck, Peter and his parents couldn't get over how much I knew about the place and Mary. Mary is not part of my family, but it does speak to our connection and the role she has served in my life since Mattie's death.

As today is July 4th, I would say the whole Boston area was decorated for our Country's birthday. Flags and buntings were everywhere. When we went to Houghs Neck the patriotism lining the marsh also caught my attention.

From Houghs Neck, here is the incredible view you see of Boston. It almost looks like a postcard.

As we drove through the streets of Houghs Neck, I could immediately see why someone would fall in love with this seaside town. It is small and clearly has its own character and charm.

We drove out to Nut Island, which is part of Houghs Neck and I took a photo capturing the day with Peter's parents.

Before leaving Quincy we ate lunch by the water at a restaurant I have heard Mary and her family talk about for years, The Clam Box. Inside the restaurant, this sign caught our attention! Just like the sign points out..... the water was really to the RIGHT!

A photo of Peter and I, over heated, but still eating clam chowder. Peter and I tolerate heat very differently. Peter loves the cold and I love the heat, so I function beautifully in the summer and Peter thrives during the winter months. If you look closely you maybe able to see that Peter was turning a bright shade of red today from the heat! He was a good sport to be eating clam chowder with us!

Wednesday, July 3, 2013Tonight's picture was taken in July of 2003, on the beach of Duck, North Carolina. The beach was NOT Mattie's favorite place to be when he was one year old. In fact the sound of the ocean and its vastness scared him. Mattie wasn't wild about the sand either. All of that changed with time and subsequent visits to the beach. But you can clearly see Mattie wasn't happy here and that his eyes were on the ocean at all times!

Quote of the day: The tragedy of life is what dies inside a man while he lives. ~ Albert Einstein

Peter and I got to Boston safely on Tuesday night, after a nine hour drive. Given that it is a holiday week, in all reality we made very good timing. We just covered a great deal of territory and by the time we arrived we were thrilled to be out of the car.

Our day began with this wonderful sighting!!! Peter's mom has a hummingbird feeder in their backyard and THROUGHOUT the day this feeder had a visitor. It is a glorious sight to see hummingbirds buzzing on by and the irony is they are not at all disturbed by our presence or the fact that we were watching them. Mattie would have absolutely loved this sighting. In fact in Barbara's backyard Mattie saw his first chipmunk. Mattie loved watching the chipmunks and even nicknamed one of them, "Chippy." Mattie loved Chippy so much that he wrote a story about him in kindergarten. Something his teacher absolutely loved and we cherished. Mattie created not only the story, but illustrated it through his own drawings.

We all drove to Salem, MA, today to visit the Peabody Essex Museum. The Museum has a fascinating new exhibit as part of its permanent collection. Literally within the museum is a merchant's house, Yin Yu Tang, that has been relocated piece by piece from southeastern China to the Museum. Walking through the house gives you an immediate feeling for aspects and values within the Chinese culture such as family, tradition, and symbolism. In all reality, I am not sure photos or paintings would have elicited the same feelings. There is something very tangible about walking through a house, seeing the rooms, seeing pieces of furnishings, and hearing about the family's life through an audio tour. This particular house was in the Huang family for 200 years and the house saw times of prosperity and times of great strife. Within this house 40 or more family members lived together and being a woman in this house meant a full day's labor from cooking, cleaning, and caring for children. Children did not have it easy either as they had chores such as cleaning out the chamber pots. Nonetheless, it was clear that family was everything and just like some of us would have a calendar in our homes to remember appointments and other special dates in the year, this family had an historical family calendar (a calendar of generations!). Literally each family head was listed on this calendar along with birth dates and anniversary dates for these individuals. On those dates (even if the date was in reference to a deceased family member) no other plans or parties were celebrated so as to focus upon and pay respect to the family leader! I attached a link to the house in case you want to take a virtual tour of what we experienced today. It was a unique cultural experience and glimpse into history. http://www.pem.org/sites/yinyutang/

When we came home from the Museum, soon there after Peter's family cat died. She waited to say good-bye to her loved ones! She died peacefully in their kitchen, but since we recently lost Patches we understood the emotions of losing a furry family member. In fact, today's loss reminded us of the pain of losing our Patches on March 21. Life is not the same for us without Mattie and Patches!This evening, we went to visit Peter's brother and his family in Newton, MA. After dinner was over, it was funny, all the men went into the family room and watched a Red Sox game and all the women stayed in the kitchen to talk. We talked about books, loss, grief, and even technology. My niece who is soon to be 15 years old was part of our girl's conversation. She was very introspective and sensitive and it was wonderful to hear her perspective on different topics. It turns out we enjoy reading many of the same books, so books gave us an entry point into talking about other things. I am always impressed when I meet a teenager who enjoys the art of actual conversation, embraces eye contact with you, and wants to hear what you have to say. It is refreshing and instills my hope for the next generation. On a funny note, I am quite sure I passed at least 20 Dunkin Donut stores today. Honestly I wouldn't believe this if I didn't see this for myself. I have come to the conclusion that two things are a guarantee in Boston..... you have to be a Red Sox lover and your coffee of choice is from Dunkin Donuts. The quantity of stores speaks for itself!

July 2, 2013

Tuesday, July 2, 2013 -- Mattie died 199 weeks ago today.Tonight's picture was taken in July of 2003. That week we took Mattie to the Outer Banks of North Carolina. That was Mattie's first trip to the beach. It was super hot and very humid, yet we got around and explored the barrier island from Corolla to Cape Hatteras. As you can see Mattie was dressed for July 4th! Not only did red look good on Mattie but it was his favorite color. Quote of the day: Taking pictures is savoring life intensely, every hundredth of a second. ~ Marc Riboud

I realize people make fun of me because I carry my camera in my purse. I have it on hand at all times. I don't let these comments bother me because what I learned as Mattie's mom is that picture taking is CRUCIAL. Sometimes you don't get a second chance to capture a memory!!! Where would I be NOW without photos of Mattie? I documented mostly everything in his life, both when he was healthy and when Mattie was battling cancer.Perhaps as Riboud's quote states today, with Mattie I was trying to "savor life intensely."I am posting today's blog EARLY. Peter and I are driving to Boston this afternoon to visit Peter's parents for five days. As my faithful readers know, I HATE to fly, so if there is an alternative method to get somewhere, I most likely will be taking it. We have a long day ahead of us and I figured it made sense to update the blog while I was still home because after nine or more hours in the car, I won't be in a writing sort of mood later. Thanks for checking in with us and tomorrow I will be writing to you from Boston.

July 1, 2013

Monday, July 1, 2013Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. Looking like the picture of health and if you look closely he had a STICK in his hands. No nature walk was complete for Mattie without claiming a stick or branch to take home. This set of rocks is on Roosevelt Island and Mattie loved climbing them. It was beautiful to watch that process because when Mattie was very young he needed assistance climbing up the rocks. However, naturally as he grew older, he climbed them on his own and became independent. I wasn't fortunate enough to see Mattie grow up and be independent and become his own person. I only saw glimmers of his independent side but I have no doubt he would have been an extraordinary adult, as he was a child. Quote of the day: I guess by now I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence. ~ Alyson Noel

I had a lovely email exchange today with someone I just recently met who lives in our complex. She mentioned how she feels like she knows me already and yet of course we just met. This is not unusual, I have heard this from several other people who read Mattie's blog. As of July 23, I will have been writing this blog DAILY for five years. With NO breaks! You share my daily highs and lows, you have followed my illnesses and headaches (which are all by-products of grief), and you even come on vacation with me! Hundreds of you still check in on the blog even now, now that Mattie is gone from our lives. I have heard that some of you either start your day with me or end your day with me. Whichever you chose, please know I am honored that you care and continue to read about us and our memories of Mattie. I wasn't sure it was possible to get to know Mattie and me without ever meeting us. However, so many of you tell me this is true, and if it is, then I know I am doing a good job as a writer! My neighbor and I chatted back and forth today about our health care system. There are so many earth shattering revelations I made while Mattie was battling cancer and dying. The first revelation is that though we live in the 21st century, modern medicine ISN'T so modern especially as it relates to childhood cancer. The second revelation is though doctors and hospitals talk at infinitum about the practice of patient centered care (The Institute of Medicine defines patient-centered care as: "Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions."), in reality it is hard to implement and in many respects patients are not considered part of the care team. I have to admit that if I thought this issue was a problem when caring for a sick child, but it is about 10 times worse as an adult migrating through the health care system. The level of insensitivities I experienced over the course of 2012 and 2013 with each of my pelvic scans are all noteworthy. Everything from unprofessional oncology staff, techs who don't know what they are doing, and doctors who feel it isn't important to call me with test results. Even after I tell them I have lost my son to cancer and therefore scans make me very anxious. How much clearer could I be???!!! Sometimes I wonder what happens to doctors? Are they desensitized to the feelings of their patients over time as a way to survive in a hospital environment, or is this a trait that is taught and rewarded throughout their entire medical education process? Either case, I have learned that the truly outstanding doctors are able to be competent and gifted in their science, but also are able to relate and talk to their patients. It is the ART of medicine that is truly beautiful and this art means allowing the patient to talk, to feel open to communicating about pain, symptoms, and to become invested in his/her treatment and care. An outstanding doctor will NOT find this threatening. Annoying at times, but not threatening. I do believe that when selecting any doctor (but especially an oncologist) such a fit is CRUCIAL. I guess what I appreciated about today's dialogue is that my neighbor allowed me to reflect on the fact that Mattie's blog is timely and real. One doesn't need to have a child diagnosed with cancer to relate to my writings. It is through Mattie's battle that I have learned a great deal about health care, even more about caregiving, and of course the battle with grief and the loss of a child. Illness, dealing with the medical field, caregiving, and loss are all universal human issues. At some point each and every person reading this blog will have one or all of them and it is comforting for me to hear that so many of you have gained some sort of nugget of knowledge or understanding from Mattie's story that you have applied to help your own situation.

June 30, 2013

Sunday, June 30, 2013Tonight's picture was taken in May of 2008. Mattie was dressed up for Grandparent's Day at his school. Mattie actually did not mind getting dressed up, which made the whole process very easy for me. However, I never went shopping for a little boy's jacket, shirt, and tie before that year, so I had quite a learning curve. But I rose to the occasion, as I did so many other times as Mattie's mom.

Quote of the day: You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp. ~ Anne Lamott

It was another stellar weather day in Washington, DC. Filled with rain, greyness, and lightning. My favorite combinations! This horrible weather affects my mood and on the weekend I do not need any help in this department. When I woke up this morning, I found that Peter already bought paint for the bathroom in our master bedroom. I am sure Peter figured starting small would help to motivate me to do other things. All I know is painting a bathroom is a killer. Maybe because there are many areas that require hand brushing and attention to detail, rather than just painting a large living room wall. Nonetheless, we were at it all day today. We transformed a white washed bathroom into a sky blue haven. The color is very inviting. However, I can get easily overwhelmed and as I told Peter, before we can proceed painting anything else, we really need to address Mattie's room and our bedroom. Unlike how we lived when Mattie was battling cancer and then almost two years after his death, our living space is now organized. Yet things still need to be purged from filing cabinets to toys and books in Mattie's room. Seeing the big picture is daunting and can easily turn me off from wanting to address the entire project and paint. But I will attempt to take it one room at a time.

Later this afternoon, I went to visit my friend Mary who lives in an assisted living facility. Earlier in the day I boiled potatoes and turned them into whipped potatoes. Mary LOVES potatoes, so I figured she most likely would love them whipped. They are easier to chew and swallow, even compared to a mashed potato. Mary devoured a Tupperware full of potatoes and with her eyes wide open began to stare at me. I figured she was trying to tell me something. So I asked her what was with her "big eyes!" Her response was that she was thinking of me. When I inquired further, she wanted me to know that she feels I am a special friend and knows I take good care of her. For someone who is basically mute, this was an impressive couple of statements she delivered. Mary is the perfect illustration of my care philosophy. A person maybe unable to communicate at times and may seem out of it, but things are getting absorbed on another level. Which is why I believe it is important to always talk to Mary, read to her about current events, and update her on her family's whereabouts.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.